A few weeks ago we had a conversation about feelings over dinner. For each feeling, Scott, Alexa and I took turns describing something that makes us feel that way. My family makes me happy, Skydiving makes Scott excited, seeing Daddy sick makes us all sad and being at home makes Alexa calm. When we got to Jealous I couldn’t think of anything, and I realised how much has changed for me. As I explained to Alexa, jealous is when you want something that someone else has got. I don’t remember the last time I felt jealous. I tried to conjure the feeling by calling to mind other families whose lives are easier than ours right now. I thought of many families who are not battling with cancer, not juggling shared parenting and not dealing with childhood epilepsy. I thought of families who earn more money, have ensuite bathrooms (ahhh) and buy more fabulous clothes. I thought of friends with healthier bodies, who live adventurous lives and go on glamorous holidays. I drew a jealousy blank. I can honestly say I don’t want what they have. OK that’s not entirely true. I do want an en-suite bathroom and I wouldn’t say no to more fabulous clothes. But I don’t want the lifestyle I’d need to pursue to make those things possible, so I’m not jealous of the lives of the people who have them. Don’t get me wrong, I’m not suggesting hard work or well paid jobs are bad lifestyle choices. I admire the people I know with high flying careers and am proud of what they’ve achieved by working their butts off. It’s just that when I tried that, it made me unhappy, so I gave it up. The bottom line is, even though things are tough for us right now, I don’t want to be living any other kind of life. There is nothing lacking in my life; no gaping hope that needs to be filled. Cancer is no walk in the park, but we are the lucky ones. I know Scott will get better and I’m OK with going through the process to get there.
We are lucky to live in a country with publicly funded cancer treatment. Chemotherapy, radiation treatment and surgery aren’t much fun, but compared to dying from cancer, they’re not bad. Having access to this treatment means we can say with some certainty that Scott will be cancer free one day. Until then, we are on this road for better or worse. Most people would focus on the ‘worse’ part of that statement. I certainly have. The effects of chemotherapy and radiation are just horrendous. What’s so good about cancer treatment? Well, nothing at first glance. It’s been awful. For a few weeks Scott was in excruciating, debilitating pain. The abdominal cramps were up there with labour (the childbirth kind, not the political party) in their intensity. It came in waves that left him unable to speak or breathe, doubled over in pain. He couldn’t leave the house; could barely walk; couldn’t sit up without pain. The radiation burns around his pelvis and anus made going to the toilet a special kind of hell. And the chemotherapy hung over him like a dark cloud of fatigue and depression. He’s been living on a cocktail of Codeine, Buscopan, Gastrostop, Paracetamol and various creams, soaks and gels to ease the discomfort. Looking at it from the outside, it might seem like it’s all ‘worse’ with not much ‘better’ to speak of at all. For a few weeks that was very much how it felt. But now there’s a light at the end of the tunnel.
The chemotherapy and radiation stage has ended and Scott has 2 months to recover before surgery in August. The pain is less every day. About a week ago he dropped the pill count from 30 a day to 20 a day. He can now make it through the night without a 2am cocktail of pain relief drugs. This week he’s only taking the occasional panadol. He has to nap most days as the fatigue still weighs heavily, but he can head out for short walks, drive the car and pick up things at the shops. Today he’s even doing a few hours of work. Soon, he’ll be back to work a few days a week – albeit from home for the time being. Compared to what things were like a month ago, we are in a pretty good place.
Over the next 6 weeks, life will slowly return to normal, which should be wonderful, but actually I’m finding it quite difficult. As Scott emerges from the haze of chemotherapy and radiation I can feel my own adrenalin drop, and my energy along with it. The immediate crisis has passed, and it’s weeks until the next one. Meanwhile life still goes on and we’re back in the waiting game. There’s more time to think and more time to worry. I’m drawn to distractions like Facebook and movies but I’m trying to stay in the moment and enjoy the time for what it is. And you know what I’ve realised? Life is pretty good. I can’t imagine being anywhere else, in any other time or place. We are in this for better or worse and I don’t think it has to be all ‘worse’. Yes my husband having cancer is utterly crap, but I can see the good that will emerge from our time on this journey. I wouldn’t say the worse things outweigh the better right now, but I can already see glimpses of life after cancer, and it really is better than life before. The details of our life may stay the same, but the light within us will shine brighter and illuminate the view. When Scott climbs out of the cancer treatment hole, I think we’ll discover a more beautiful world, all the clearer for the lens through which we see it.
Here are six things that are already better, not worse than before Scott’s diagnosis with Bowel Cancer.
1. I’ve Let Go
With everything else to manage it’s just been too hard to sustain those old habits that used to feel important. It’s no secret I have a teensy problem with control. (I prefer to avoid the word ‘freak’.. but…you know…) Since Scott got sick I’ve had to let go of control and focus on the things that really matter. I can’t keep the house tidy, source only locally grown produce, minimise meat consumption AND keep my husband’s weight above 70kgs. I can’t make bento-box school lunches, clean the house every time someone comes over and put on a happy face no matter how tough things are. I have to let something go. So what really matters? My family. Spending time together. Taking care of myself. Eating whatever food is in the house as long as it sustains us for another day. What doesn’t matter so much? Well, everything else.
2. I’m Learning To Accept Support
The public Emily is the one that says ‘I got this’ and then goes ahead and proves it. The private Emily is often utterly exhausted with all that effort and wishes someone would just take care of her. Cancer has finally opened the door to vulnerability. There comes a point when you just have to throw your hands in the air and accept support. I don’t think I would ever have broken that tough girl pattern if life hadn’t chucked cancer my way, twice. The pressure was building over the last 10 years but I was holding up pretty well, I think. Managing like a boss through divorce, step-parenting, starting my own business, miscarriage, Scott’s first cancer, a painful pregnancy, early motherhood, working and being a stay at home mum, chronic pain, trouble with kids, Beck’s epilepsy, the emotional and practical complexity of blended families. I was on it. I could handle it. But then BAM Cancer again. Well I’m sorry but no. Nope. I’m done. I’m all out. I need help. Thank you world for pushing me over the edge. I really do mean that.
3. Closer Connections with Friends and Family
Something happens when you let yourself be vulnerable. You knock down the walls and let people in. Some of the most special people in my life have become even more special. I’m not the most open person in real life (odd perhaps, for someone who spills her guts on a public blog) but something like cancer knocks your guard down and lets people in. Old and new friends and family have taken the chance to slip in while the door is open, and I’m so glad of it.
4. I’m Taking Better Care of Myself
Here’s a revelation; I’m going to yoga. Twice a week. In the morning. At 6.15 in the morning!!! I’ve known for years that yoga helps me feel better and reduces the amount of physical pain I have to endure daily. But I haven’t been going to yoga. I’ve had time, money and opportunity but the motivation has always escaped me. I’m not lazy. I’ve achieved plenty in the last few years, but taking care of myself has not topped my list of accomplishments. Lately I’ve been working 3 times the hours, have had to juggle the household duties alone, take care of the kids’ emotional and practical needs and support my sick husband. And NOW I have time for yoga?? The fact is, there’s no way I could hold it together for everyone if I didn’t go to yoga. This would be less of a revelation if I didn’t see it for what it is; I am willing and motivated to take care of myself when someone else needs me to. Interesting huh? When life slows down again and everyone is less dependent on me, I hope I can still remember to take care of myself.
5. People Are Making Food For Us.
This is the best bit. People are bringing food to our house on a regular basis. I know this won’t go on forever, and actually I look forward to the day when I can enjoy cooking and sourcing food for my family again. Food used to be one of the biggest things in my life, but for now it’s just sustenance; a necessary tool for surviving each day. I’m sure we could manage – one way or another – without help, but having the help means we don’t have to be pushed to our limits. For that we are so grateful. It makes me teary to think how blessed we are. Whenever I’m hungry I can open the fridge and there’s a frittata or a soup or a tub of cheesymite scrolls. The kids go to school with Kirsty’s home-made muesli bars and come home to Kate’s minestrone. We have Scott’s mum’s egg & bacon muffins for breakfast, Danni’s frijoles negros for lunch and my mum’s veggie lasagna for dinner. For weeks when things were really bad we didn’t cook at all, we just defrosted and re-heated. Now that things are a little brighter we’re cooking more, but if appointments run over or I’m working late, Scott can feed himself and the kids with minimal effort. If I suddenly find myself overwhelmed with it all, I can just abandon plans and open the freezer. It has been such an amazing help. If you know anyone going through hard times, and you want to do something to help, food is the thing. We are so grateful to our cookers. You know who you are 🙂
6. I’m Learning About Empathy
I used to think I was quite good at empathy. As I’ve come to appreciate though, mine was a pretty limited empathetic scope. My empathy was really just friendship; I like you, so I care about your feelings. You know you’ve learned the lesson of empathy when you feel it for someone you don’t know, don’t understand, don’t particularly care about, or even someone who has done you wrong. The first time I felt empathy for someone who had hurt me, I cried for about an hour. That was a turning point. The day after Scott’s diagnosis I walked out onto the street and wondered if I looked any different to the world. Look, there’s a woman whose husband has cancer; you can tell by the expression on her face, the way she walks, what she chose to wear today, how she grips her daughter’s hand. But you can’t, can you? It hit me that you can never know a person’s story. Everyone you see could have something tough going on. Sometimes it’s a bad day at work. Sometimes it’s cancer. I’ve just started working at Carers Victoria on a content project. All day I read about people who are caring for a loved one who is sick, disabled or elderly. I read about their struggles and their strength and the fact that you would never know their story if you saw them in the street. I’ve started seeing real people everywhere I turn. Not strangers, but real people – human beings – with all their struggles and joys and vulnerabilities. Just this morning a parent approached me and said she’d heard about Scott’s cancer. She didn’t want to intrude but she wanted me to know that she understood. Her son was in remission from cancer and her family had been through this too. Everyone you see has a story, and most of the time you’ll never know what it is. You don’t need to know their story though, you just need to know that there is one. The more I understand empathy, the more alive and connected I feel.
What’s so good about cancer?
Well, why does it have to be all bad? Everything in life happens for a reason. I truly believe that. I’m not sure why this is happening to Scott, but I don’t see why it couldn’t be happening for a good reason. This cancer can do good. What if the end game was more than just Scott getting better. What if everyone around him could learn and grow from the experience. The people who know and love Scott have struggled to accept that this could be happening to someone so fit, healthy and strong. It seems unfair. Cancer’s a bitch they say. It’s so random. I don’t think it has to be that way. Why can’t it mean something more? If the people around Scott turn his experience into positive things in their own life, then this cancer has been a force for good. That’s a reason to embrace. That’s why I share. Think about it.